Tuesday, October 13, 2015


This week my mind has been drawn to the past 4 years.  This morning I took a few moments to look over my blog from October 2011... this week, this month that will forever be etched in my mind.  The week/month the roller coaster ride into the hell of Aplastic Anemia began.

- October 11th Joshy was admitted to the hospital.
- October 12th Joshy had his 1st transfusions.
- October 13th we were introduced to the word Pancytopenia

At that point we had never heard of Aplastic Anemia.  We had no idea that transfusions would become common place.  We had no idea we would be hospitalized for 6 months.  Somewhere during the first 6 weeks at the local hospital Pancytopenia was replaced with the word Aplastic Anemia, but we were not given a firm diagnosis until after we were transferred to the Cancer Center in Niigata city on November 21st.

During the first 6 weeks we took a hit & miss approach to a find a solution to the problem... We were hopeful that the pancytopenia was caused by one of Joshy's medications so we took him off one and waited.  Took him off another and waited.  Took him off a 3rd and waited... Nothing seemed to make a difference.  It was at that point we were transferred to the cancer center where more tests were done and one last med was taken away.

Mid December we reached the conclusion that it was not medication related and a more drastic treatment plan needed to be made.  On December 19th Joshy started a 5 day round of ATG, a chemo type drug.  This took his counts to zero, in an attempt to reboot his bones marrow.  If the treatment is successful one should see a turn toward normal within 3 to 6 months.  Joshy being Joshy it has taken years rather than months.

Today Joshy's levels are finally at the near normal level.  We are now starting a ween from the immune suppression medication.    We can now get out of the house more, provided we take some precautions.  We were even able to make a trip to the states in September.

1 comment:

Karen said...

Wow! It is amazing to look back and see the journey we have been on. So thankful that things are looking better for Josh, and praying they continue to improve.